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Sie Center visit

Did I mention that we went out of town a couple weeks ago? Well we did. We headed over to Denver to take Daniel to the Sie Center and visit some of Brian’s family. So even though the Sie Center was the last thing we did on our trip (because we drove over on Saturday and his appointment was Monday morning) it’s the first thing I’m going to write about.

Short version: The visit was awesome. The Sie Center is awesome. The people who work there are awesome.

Longer version: Daniel isn’t having any health issues, the Sie Center just likes to see their kids on a semi-regular basis to check up on them. (Also, everyone there totally refers to all the patients as “our kids.” I love it.) It started like a normal pediatrician visit. They measured height, weight, and head circumference. Daniel is big on the Down syndrome charts: 85% across the board. They also checked his blood pressure and the nurse said was good, but I have no idea what the number actually was. The doctor answered some general health questions for us: what to use on his eczema (Eucerin or Aquaphor) whether they want us to switch him to whole or 2% milk (they still recommend whole. We switched the other kids to 2%) and we discussed the results of his specialist visits (eyes, ears, blood tests, etc.) He had blood drawn at his 1 year visit here and the numbers came back weird (like, lab screw-up weird) so they sent us to get his blood re-drawn after we were done. Those showed that his TSH number is high, so they’re recommending we put him on thyroid medication. (We’ll be doing that through his ped here in town.) Thyroid issues are common with Down syndrome, so that wasn’t totally unexpected.

Next we spoke with a speech therapist who had several recommendations for us, the first of which was: more therapy. I assumed we’d switch to more often when he turned a year, she recommended he see a speech therapist at least 3 times a month. So I’ll be discussing that with his therapist next time she’s here. I’d actually like to go straight to weekly, because that’s WAY easier for me to remember than 3 visits a month would be. Early Intervention been really good about going with Sie Center recommendations/what I’d like to do, so it shouldn’t be an issue. We also spoke quite a bit about switching Daniel from a bottle to a cup. Right now he really doesn’t drink out of a cup and her recommendation was just to try a bunch and use whatever works for him. There’s some discussion about how various cups affect speech development, but she said that with Down syndrome there’s SO much that affects speech development that I shouldn’t worry about what kind of cup he’s using. The speech therapist also gave my number to their feeding expert (all she deals with are feeding issues!) who called me and said basically the same thing. We also talked about how he’s doing with eating, with signing, with gesturing, and all those speech/communication related things.

After that we saw the physical therapist who was very pleased with his progress. She answered all the questions his regular therapist and I had discussed (mostly questions about particular therapy props) and had some recommendations for what we should work on next. It’s pretty fascinating to watch her work, because she just has to see him for a minute or two and then she knows right where to go with the therapy. I mean, she’s seen Daniel twice, ever, but she was as natural with him as his regular therapist.

Next we talked briefly with someone who is working on a team putting together a database of medical information for people with Down syndrome. No identifying info, obviously, just medical stuff. The idea is that the database could be used to calculate statistics on the likelihood of a child with Down syndrome having various medical conditions. Statistics like that exist for the general population, but not so much for the Down syndrome population. Pediatricians generally only have a couple patients with Down syndrome (mine has 2, including Daniel) so that kind of information would be especially useful to them. We said yes basically before she was done telling us about it, because OH MAN I have looked so hard for info like that! I would love for it to exist! I love data. She told us it was the fastest “yes” she’d been given.

And last we spoke with the social worker. She told us about the National Down Syndrome Congress Convention which is being held in Denver this summer! (Actually she was the 3rd person to tell us. Everyone is very excited about it.) They change location every year, so to have it somewhere so close to us is great. I’d really love to go, so hopefully we can work that out.

Sounds like a really productive visit! I’m so glad it went well. I have a thyroid condition too and it’s very manageable. I hope you’ll find a dose that works for him soon so that you don’t have to spend any time thinking about his TSH.

Of all the health issues he COULD have had, a thyroid condition seems like nothing! I do hope we find the right dose quickly though, because having his blood drawn is just about the saddest thing ever.